I've Had Epilepsy Since I Was 12 Years Old. And I Still Can't Tell What My Aura Is. How Did You Guy's Figure Out What Yours Were? | MyEpilepsyTeam

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I've Had Epilepsy Since I Was 12 Years Old. And I Still Can't Tell What My Aura Is. How Did You Guy's Figure Out What Yours Were?
A MyEpilepsyTeam Member asked a question 💭
posted January 31, 2023
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A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member The other thing to realize about Epilepsy is that it is a mutating disorder, thus when I first started having my seizures, I would get the same aura (deja vu sensation) every time, but I would also get auras when I was not having a seizure. And over time, I got my aura types, but the auras only come with the Focal Onset Aware Seizures (Simple Partial Seizures). The others require someone else to witness them and tell me about them for me to know that I have had one.
And though not physically dangerous as the full seizures (because of the falls even before the rest), the Focal Onset Impaired Awareness Seizures (complex partial seizures) are much more dangerous when you have them where you do not have someone can recognize them -- especially if you are talking during the seizure, because that is your subconscious mind speaking or your seizure has you believing someone around you is a friend, relative, etc. I had two defend myself twice (once where I used to work) after determining that I actually had one where I had one in a place where someone did not recognize it was a seizure (even when they knew I had Epilepsy -- but do not realize that there are various seizures and in the case of some, there are many variations in the form (this is where having a good imagination can make things much worse for you)

I have been seizure-free for 9+ months

posted February 1, 2023
A MyEpilepsyTeam Member

My aura is a feeling of fear, that slowly builds up in in my stomach - or an anxious feeling if you like.
When I was young (I'm 71), I remember getting a weird taste in my mouth and I would smell something that wasn't there, but it's the feeling of fear that's the big one.
Because it builds up slowly, it's always given me plenty of time to get myself in a safe place before the seizure happens.
Sometimes I would get a tickling sensation inside my head, which felt like someone was tickling my brain or the tissue attached to the inside of my skull - that drove me nuts, but that one's gone now.
Hope that helps a little.

posted February 28, 2023
A MyEpilepsyTeam Member

I remember when I had told my doctor about having these frightening feelings I get like something bad was going to happen. My doctor had nothing to say. It was not until I changed doctors when I was told those feelings that I get is an aura.

posted March 9, 2023
A MyEpilepsyTeam Member

I found at times I was getting scared for no reason. Then I found it either got worse and I blacked out or it just lasted 30 seconds and went away. These were my auras.

posted February 1, 2023
A MyEpilepsyTeam Member

I gradually slip into a different state of prospective "everything seems strangely different yet looks strangely the same"...im looking around feeling EVERYTHING IS the same but realise its me who is different and ive had this feeling numerous tines before. This in turn gives me overwhelming FEAR accompanied by that fact its clear my balance, coordination, verbal skills and thinking is heavily compromised. Theres a spiralling feeling and im very much heading in one direction.....sometimes taking a heavy toll i can withstand the onslaught of draining feelings i recieve, others i black out and i believe just after i realise its myself.
One time i managed (with great difficulty) to stagger to splash water on my face,sit down slowly slipping water for 1 hour... took a great deal out of me.. made me think that blacking out is like a protective mechanism in someway.

posted January 31, 2023 (edited)

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